started treatment without blood work first

[mll]

I don't know if I totally screwed up or not. I was diagnosed in Aug. 02 w/ hcv. My biopsy showed little damage, grade 1 stage 0. I decided to treat to try to get rid of it before the damage starts. The nurse gave me the prescription 6 months ago, we were awaiting approval from insurance. She gave me papers to take to the lab before I started and told me I would have to come in for her to show me how to do the injections. Then on a different visit she gave me the kit with the video of how to, etc. Finally got the approval. I called left message after message that I would be starting on Sunday. My doctors nurse never returns my phone calls about anything. So finally I thought the kit she had given me must have been what she wanted me to come in for. The evening before I started I found the blood work papers that I hadn't done so I called the doctor's office and got the Dr. on call. He said I could go ahead and start the peg/copeg and go in on Monday for the blood work. So that's what I did. Then on Friday the following week she called saying we were ready to start. When I told her I had already started she chewed me out royally. Saying I wasn't supposed to do that and I knew it. I told her I called 4 times and she said she knew that. She said the doctor wouldn't be happy and I needed to come in for different blood work immediately. Have I screwed this all up? I don't think they understand the anxiety related to all of this. I felt like I was onm my own and was being smart by calling the Dr to make sure before I started. I don't see him until April 1.

[FlaWife]

Wow - I had no idea! My thanks to all of you, I will make sure he reads this when he gets up today.

[jonihs]

My Dr. had me do a dialated eye exam, see a shrink, and redo all my old bloodwork from 7/02, before beginning tx. I have cirrhosis, so my blood work was done weekly until everything leveled out and stayed there, but there are standing orders at the lab that if I have any concerns, they do bloodwork on my request. Also when my platelettes went down, she was ready to give them to me IV rather than stop my tx.,or lower my dosage. I live in a little bitty town in Montana and I thought that would be a disadvantage,  but I was wrong. I am her only Hep C patient,(I was her firsrt patient when she moved here in Aug 02 right after she moved her. She has freinds from Boston that she went to med-school w/ and if she has any questions, she calls them. I guess it helps to be in an area where each patient is a person, not a file!     Joni

[jonihs]

My Dr. had me do a dialated eye exam, see a shrink, and redo all my old bloodwork from 7/02, before beginning tx. I have cirrhosis, so my blood work was done weekly until everything leveled out and stayed there, but there are standing orders at the lab that if I have any concerns, they do bloodwork on my request. Also when my platelettes went down, she was ready to give them to me IV rather than stop my tx.,or lower my dosage. I live in a little bitty town in Montana and I thought that would be a disadvantage,  but I was wrong. I am her only Hep C patient,(I was her firsrt patient when she moved here in Aug 02 right after she moved her. She has freinds from Boston that she went to med-school w/ and if she has any questions, she calls them. I guess it helps to be in an area where each patient is a person, not a file!     Joni

[cindee]

I am now 4 months post tx. and I know how you feel. I just haven't been feeling "quite right" and I was supposed to have to wait to get a 6months post tx blood test done. I called to get them to do it sooner, I was told by the know it all rec't that I was cured and it was the doctor's policy to wait 6 months. I told her, "would it be so much trouble for you to just ask him?" I got a call back saying , he said to go get it done. So I did last Thurs. haven't heard anything yet.

What I want to know is what sx are you having? I was first diagnoised by my GP that I had fibromyalgia. He sent me to a pain specialist and the physcologist said I have tissue damage...that's what's causing my pain and he has seen a lot of it w/ post tx hep c ppl. I go to see my pain specialist this coming Tues. The physcologist syas I need to be a 12 hour pill/patch. I am so fatiqued. I have been sleeping 15 hrs a nite and day!!!! My hubby wakes me to take my meds. then I go right back to sleep. I never feel rested. Sp please let me know What YOU are going thru? I am really concerned about this! Love, Cindee  

[raheem]

How have you been?  What side fx or damage are you still experiencing from the medicine?  I've got 7 more weeks to go and it seems to be a little rougher as time goes on (vision, stamina, red dots, ANC down to 432 and I'm only on 75% interferon dosage for the past 3 months).

[Tallblonde]

I'm sorry to read that you're still having such a rough time.  Are you second-guessing your decision to treat?  If you had known then what you know now, would you have made the same decision?  

I realize this topic is very touchy, but I think your perspective can be very helpful to me and others who are still grappling with what to do.  

I hope you begin to feel better soon, Willing.  

Susan